Double Booked: The Real Costs of Disability to Working Families

When our youngest son was born in 2009, I was climbing the ladder at a Big 4 consulting firm doing management consulting for the federal sector. My firm had generous benefits, “wellness” benefits (they paid for my gym membership), a 401k match. They let me expense my cell phone, offered short-term and long-term disability benefits and paid personal leave. This firm even has a generous parental leave policy, but I doubt that they would still employ me in my current circumstances.

When Julian was born with Down syndrome, the consulting career I knew was over. While our son is healthy, he still requires more than most typical work settings can tolerate. He has doctor’s appointments, school meetings, and speech therapy. Since he is only 4, these things are still fairly simple. But as he gets older, there will be more uncertainties and fewer child care options. For instance, It is unlikely that our after care provider will take on Julian when he goes to kindergarten; providers often cite “medical concerns” but in reality they are fearful of what it would mean to bring a child with a disability into their environment. They believe that their staff doesn’t have the resources. And at a certain point, child care can become more expensive than a family’s income can absorb.

I knew that I would be able to use the valuable consulting skills I’d acquired to advocate for my son and others like him. I now run a coalition of 22 national groups that work for the full inclusion of Americans with disabilities in every facet of life. Most of my colleagues are family members of people with disabilities or people with disabilities themselves. When I say that we have a doctor’s appointment, I am supported. And I have flexibility and control over my schedule, which is invaluable.

But that flexibility comes with real costs. My salary is less than one-third of what it would have been had I stayed on my career trajectory (and even less than it was before I went to business school). I have no IT help desk, no support staff, no benefits, and certainly no 401(k) match. Thankfully, my husband works for the federal government, so we do have health insurance and some measure of consistency. But not all families have these options.

This path has been my choice and one I made enthusiastically. The work I’ve done over the past few years has been the most important of my career. I benefitted from the corporate world but longed to do work that was more meaningful to me. In my current position, I happen to also have a vast support network and a job that allows me work flexibility to meet the demands of my family’s life.

But what about the single parent who must stop working because her child requires round-the-clock care? There are millions of children with disabilities and/or childhood diseases, and caring for these children, which most parents are honored to do, is expensive in so many ways.

It has been estimated that providing supports for a person with a disability would cost an individual family between $2 and $3 million over the course of a lifetime. Few families in this country can afford such supports. One family I know lost their house while their adolescent son was on a waiting list for adult services; in the meantime, they had to foot the bill for his medical insurance and ended-up filing for bankruptcy. Sadly, this is not an unusual scenario.

Kofi Annan said that “the happiness of any society begins with the well-being of the families that live in it.”

Our society—through government policy and private workplace supports—must do a better job of meeting the needs of working families because without such supports, our society is fragile. If our only goals are maximum productivity and efficiency, we have lost our most valuable assets: community and compassion.

Allison Hassett Wohl is the executive director of the Collaboration to Promote Self-Determination, a coalition of 22 national groups advocating for the full inclusion of citizens with significant disabilities. She is the mom of three boys, the youngest of whom has Down syndrome.

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